Sunday, December 30, 2012

I have a cold. I have had it for a few weeks now and I am ready for it to go away. It stole my singing and speaking voice over Christmas so I had to skip singing with my choir at our annual Christmas concert and midnight mass. If that wasn't insult enough, I completely lost credibility as an authority figure where my children were concerned, as all I could do was squeak pathetically at them when they were being less than angelic.

But tonight brought the diamond in the tiara. Bella asked me to sing her a lullaby as she often does, when I tucked her in. My voice is just starting to come back and I was thrilled when I realized I could carry a recognizable tune. Bella, however, was not impressed. She stopped me half way through and told my that my voice was not so good and could I please try another song.

Saturday, December 29, 2012

We are on a much needed mini-vacation so our dog Trooper is staying with friends of ours. If you look up the definition of friendship you will find this: people willing to house your gigantic, stinky, drooling, sensitive-stomached Mastiff while you are away.

I received this photo today and can safely say the dog is not suffering in our absence. He's as happy as he gets when someone is willing to lay on the floor with him and cuddle.

If you know me you know that I am not the dog's biggest fan within our household. Don't get me wrong, I love the dog, but you wouldn't know it by observation. I don't pet him often, never get down on the floor with him...at best I give him a rub with my foot. Why? Because he really is disgusting and I spend most of my life nauseous. But when he is freshly bathed (as he was when we handed him over) and looking so sweet and furry, I can't help but miss him.

Wednesday, December 05, 2012

Yes, of course I wanted to see a perfectly clean brain with no spots at all. Yet, my biggest fear was that there would be half a dozen or more new spots growing or that the one that was recently treated was still growing unfettered. The news I got is in the middle of these two extremes and I'll take it gratefully.

I am showing three metastatic spots, all previously seen, one recently treated that has not grown or changed and the other two too small to need any attention at this point. My brain radiologist was happy with what he saw and says he will see me again after my next scan in early February. I have at very least two more peaceful months, so what is not to be happy about? As they say on the breast cancer boards, I get to have a dance with the stable boy!

I am adjusting to my new medication regime which is, overall, much better. Every other week I take Xeloda and feel sick and tired for that week. During the "off" week I am feeling better than I have literally in years, because my doctor reduced my dose of Tykerb (daily oral) to accomodate the side effects that come with the Xeloda. I had no idea how much of my general malaise was due to the dose of Tykerb I was taking until it was reduced. I am also finally off my two daily injections of Lovinox, so I am taking less medicine overall and feeling nearly normal during my off week. I had forgotten, truly, what it feels like to feel good for days at a time.

As usual, God has blessed me richly, and I am reminded that no news really is good news. Thanks for all your prayers!

Saturday, December 01, 2012

Not a baby any more, I'm afraid, but always the baby of the family. Happy fourth birthday Natalie!

We celebrated at Magic Mountain today (Lindsey happened to be participating in a cheer competition where her team took home first and second place trophies in the two divisions in which they competed...GO REBELS!) and we will have a more traditional party tomorrow with cake and a jumper and a few of her little compadres.

I simply can't believe Natalie is four, although at the same time she has seemed far older than she is for some time now. She is very articulate for her age and has a well developed sense of humor that keeps us all laughing. She is smart as a whip, independent and competent, and as stubborn as they come. She is so sweet and cute and loving that I mostly ignore the stubborn part, because it is impossible to stay mad at her for more than a minute. She has us all wrapped around her little finger and I can't imagine life without her. I feel so blessed to be healthy enough right now to give her all the attention the youngest of seven can get and am savoring this last year and a half with her before she goes off to Kindergarten.

Friday, November 16, 2012

Yes, it's true. Today marks three years since my diagnosis. Three years of ups and downs, of worry and relief, a true physical and emotional roller coaster. I know I am very blessed to be here to note this date and thank you all again who have prayed so tirelessly for me and supported me in every way for three years now. One day at a time will hopefully collectively bring me three more years times 10 or more. One can hope!

Along with noting this milestone, I would like to report on just one of many reasons I am determined to continue logging these anniversaries year after year...

Today Natalie and Bella were being particularly challenging and I wasn't feeling 100% up to dealing with it all. As we pulled into the garage after a very long drive home from the gym I told them that they had behaved very naughtily. From the backseat, a cheerful voice said, "Natalie?! That's my FAVORITE word!"

Friday, November 02, 2012

First of all, I did not forget about Halloween pictures! I will post some as soon as my tech-savvy husband returns from his business trip and can show me how to put the pictures we took with my still- newish fancy camera on my ultra-light computer that does not have a card reader slot.

In the meantime, I thought I would share the news from my most recent PET/CT scan. This is a scan that does not include the brain (I will have a brain MRI in 4 weeks) but rather goes neck to knees. It is checking for progression in soft tissue organs such as lungs and liver, and also quantifies activity in those ever present and pesky bone lesions.

The good news: liver and lungs remain clear.

The not-as-good news: several new bone mets have popped up with intense activity and some old ones continue to fester. In other words, my current treatment is not as effective as we would like it to be on my bone mets. Therefore, we need to make some changes to ensure that my bones don't weaken to the point of spontaneous fractures, and that the cancer stays put and doesn't seed to the currently healthy soft tissue organs.

So what is next on the medication merry-go-round? Xeloda. An oral chemo (a real chemo this time) taken twice daily one week on and one week off. This drug is often used in combination with Tykerb, which I have been taking for some time now, and should make my systemic treatment more effective. It will not, however, offer any benefit for my brain.

The side effects are mostly already familiar to me...fatigue, nausea, loss of appetite, etc. but there is a new one to add to the bunch. Many people who take Xeloda develop a hand/foot condition that seriously irritates and sometimes blisters the soles of the feet and the palms of the hands. This happens to people in differing intensities, so I am praying for a light case of THAT. But if it stretches out my time with my kids, it is all worth it.

But what a shame I won't be able to do dishes anymore! Happily, our wonderful helper Teresa has agreed to come another day and we now have her M-F, so I should be able to avoid drowning in dirty dishes and laundry while preserving my poor palms. Hope I can still type!

So, that's the latest from cancer central. Nothing too terrible (relatively speaking of course) but one more thing to add to my cross. For my friend who keeps telling me that God is purifying me through all of this, I can only remain grateful for that and hope that I am nearing squeaky clean!

Wednesday, October 17, 2012

Here is a picture of the former paint and color scheme of Natalie and Bella's bedroom (which used to be Tony and Sam's). They did not like it (obviously), so the state of affairs became such that they both have been sleeping in our room every night. The floor of our room has been constantly littered with small bodies and all the bedding and dolls and stuffed animals that come with them. Something had to be done...

Monday, October 15, 2012

Any Catholic who has been to church recently (and I'm most certain that is all of you!) has heard about the Year of Faith that was declared by Pope Benedict XVI on October 11. This year is an opportunity for Catholics to participate in a New Evangelization of our faith and, really, to get to know our very rich faith anew. It is a time to "rediscover" Christ and to be inspired to share our faith with others.

In this spirit, I thought I'd share a few links that you might find interesting as I encourage you to really try to live, along with me, this year of Faith. First is the the Official Site of the Year of Faith. This site has it all...a summary of what the Year of Faith is, answers to frequently asked questions, the official Pontifical Declaration and suggestions for activities you can do as an individual or as a parish to make the most of this year.

One of the things we can do this year is to simply read the Catechism. It contains everything there is to know about our faith and why we do what we do. Follow this link to subscribe to an email that will send you a small portion of the Catechism to read each day. If you are faithful to this you will have read the entire Catechism in a year. Even if you are not Catholic and are interested in learning more about the Catholic faith in a low-pressure way, this is a great way to do that.

Finally, I highly recommend attending some method of faith formation during this year. For me, this means continuing my formation and spiritual direction with Opus Dei. There are Opus Dei centers all over the world and all (most) host monthly Evenings of Recollections that offer this formation. Visit Opus Dei's Website or email me directly if you need help finding a center near you.

Most parishes will be having extra speakers and multiple evening series on different aspects of the faith. If you can spare the time, go to them. Especially go if you CAN'T spare the time!

It is easy for us all, who are so busy, to mostly ignore something so esoteric as a "Year of Faith", but if you take a few minutes to think about it and read about it, it could very well be the best year of your life!

Tuesday, October 02, 2012

My targeted brain radiation went well today (who could imagine writing such a ridiculous sentence?!).

Nevertheless, I am happy to report that I am feeling more or less normal (though exceptionally tired) and was able to conduct my activities fairly normally today. I expect, if whole brain radiation is any indication, that I will dip worse in the fatigue department before feeling better again, so I am prepared for that. But who knows, maybe I'll get lucky!

The doctor was pleased with how it went, and now we wait. And wait. And wait. We wait 2 or 3 months until I have a brain MRI to see if it worked. He gives it an 80-90% chance of success. I think he does not account for prayer in that statistic.

Lying perfectly still on a very hard table with a Jason-like mask smashing my face into place and a bite plate screwed into the face mask was not what I would call pleasant, but luckily I am not claustrophobic, and I was able to control my gag reflex by breathing through my nose and praying during the entire procedure. I was bound like that for about 30 minutes. When they finally released me from the screws I had a mask pattern ground into my facial skin that lasted an hour or so and exaggerated mouth sores where the bite plate dug into my gums, but since I have never felt so happy as when I was finally able to scratch my nose and eye that had been itching all during the procedure, I hardly noticed or cared.

I am ever grateful for this day and each day I glean from what I did today, grateful for my family, grateful for modern medicine, grateful for friends and grateful for blog readers who become virtual friends!

But I'm no foolish Pollyanna. I don't want cancer, I don't want any more brain radiation, and I want this all to stop. Enough now! Please?!

Thursday, September 27, 2012

I saw my new doctor today and liked him very much. He has a very different manner than my last radiation oncologist, a bit lighter and not so serious, which I personally prefer. Plus, he had good coffee in his office.

Although, truth be told, I wouldn't much care if the doctor had the personality of a bed post as long as he or she really, really knows their stuff, but I really don't appreciate arrogant doctors and am delighted to have an excellent, positive energetic doctor who has nary a trace of that "I'm a brain surgeon" swagger.

Anyway, he took lots of time with us in an office rather than an exam room (another touch I appreciate) to explain our options. He showed us the 3D image of the tumor and where exactly it is sitting. It is deep inside the brain and as so is inoperable. So it basically boiled down to two choices: zap it now or watch and see what it does. Everyone is so miffed by that last disappearing tumor back in March that there is almost a "let's wait and see" feel. However, it is growing so quickly (actually already 1.3 cm by his measurements in 3D, not just across one plain that showed the 7mm) that he suggested we get it before it gets any bigger. This has grown in under three months, since my last brain MRI in June showed no trace of it. My last doctor would not treat over a centimeter, but this doctor is willing to.

The concern with treating a larger tumor, I learned today, is that while they can be very precise with the intense radiation dose and where it goes, there is a halo of much less intense radiation that will circle the tumor, often leading over time to brain tissue necrosis in the area. The bigger the original tumor, the greater the halo and the more damage done to the brain. They are finding, as people with brain mets are living longer and longer, that this incidence is much higher than they had originally thought. But I still prefer to have more years with my kids than perfectly preserved brain tissue. They'll still love me if I'm a dummy. (At least they'd better!)

Today right after our get acquainted appointment, the office staff made my mask (you remember, the one that bolts you to the table and makes an excellent Halloween souvenir at the end) and something new to me...a bite plate that screws my jaw down with my mask so I can't move even the teeniest fraction of a millimeter. Warning: if you are claustrophobic or have a serious gag reflex, don't get cancer in your brain! I was fighting my own mild gag reflex all day. Breath through the nose, breath through the nose, don't let your tongue touch the intruder in your mouth. etc., etc.

So, net net, I am all set for a single mega dose of radiation on Tuesday. No decadron (yippee, yahoo!), a thirty minute procedure, and then we wait months to see what it does. My doctor believes I have a 80-90% chance of a complete response. I am praying for better odds than that, but I'll take what I can get.

There you have it, up to the minute. It's in God's hands now...always has been.

Wednesday, September 26, 2012

Results from yesterday's brain MRI were not what I had hoped they would be...but they were not as bad as they could have been either.

I have a new tumor on my brain measuring 7mm. It is located on the margin of the left lateral ventricular and appears to be a regrowth of one of the original lesions.

No, this is not good news. And, no, I am not totally surprised, as I knew, statistically, that this was eventually a virtual certainty, and that I have been very fortunate to go a year with no regrowth. Nonetheless, I was becoming pretty convinced by clear scan after clear scan that I was going to be Don Alvaro's miracle, a dream I am not planning on giving up no matter what the medical evidence says.

And it could have been much worse. If I had a lesion measuring more than a centimeter, or if I had more than six lesions, according to my previous radiation oncologist I would not be treatable, so I am actually counting my blessings that this is at least something we can attack.

I am seeing a new doctor tomorrow, a brain-specific radiation oncologist, and we will decide what to do about this pesky growth. I have no idea what is coming down the road for me in terms of treatment. Could be gamma knife radiation, could be chemo, could be craniotomy, I really have no idea. I pray that whatever it is will not be too awful and that I don't lose any more cognitive function, since I have far less to spare in that area than I used to!

Is it impossibly vain to add that I hope I can keep at least most of the bush residing on my head that I have so labored to grow in desert conditions? Gray and frizzy as it is, it is mine and I am fairly inclined to keep it.

So, I will keep you posted (Get it? Posted? Ha ha!) after I see my new doc tomorrow.

Keep praying and know that, truly, though I am acutely sad for my family to have to experience more of this, I am at peace and always, always trust that God unfailingly gives us what we need.

Monday, September 24, 2012

Didn't I say that having help with the house would give me more time to blog? Hmmm... It's not really worked out like that so far.

I am so happy to have help with the never-ending laundry and ceaseless feeding of the kids that I have been busier than ever! I have been helping the kids with their homework every night, quizzing them on vocab and for tests and, for the first time in years, really understanding what they are doing in school and sports. I actually took Natalie to the library and have been reading to her. I can't remember the last time I did that with one of my kids (for awhile now, I have been having the older kids read to the younger ones, truly a shame in retrospect).

I am getting ready to paint the little girls' room and have been busy attacking piles of accumulated junk around the house. I have updated girl scout vests, spent time playing the Dora matching game, Scrabble, Club Penguin and Racko to my kids' delight. I have taken them to the scooter store, out for ice cream and shopping when they need something specific. I have read the books my older kids are reading so I can discuss with them and help them as needed with related assignments. For someone who has spent much of the last year asleep and every waking moment fulfilling the basic needs of the family rather than enjoying the family, I feel as if I have a new lease on life. There is so much to do, especially with the kids, who I almost missed grow up in my stupor.

I would be a fool if I weren't taking advantage of this extra time to sleep as needed, but I'm no fool! I am not the same physically since my brain radiation and get terribly fatigued each afternoon. Being able to give into that and nap, knowing that the house, dinner and the kids are being cared for is such a blessing in this regard. When I wake up I am ready for the evening shift, altogether more cheerful than I was when I was trying to "do it all" and failing miserably. I am most definitely counting my blessings and thank God for the resources he has provided us to be able to get me the help I need.

I have a brain scan tomorrow--nothing suspicious, just my regular three month check for malicious activity. I am praying harder than ever that it is clear, because I am most definitely not done with my work--the only work that truly matters in the end.

Monday, September 03, 2012

I have learned several things this month that I thought I would share with you. In no particular order...

First, I learned that there is such a thing as "right" and "left" socks. Imagine my surprise when Joey, who has always been particular about his socks (I remember hours of preschool torture when his sock seam wasn't lined up properly), rejected his folded and paired socks because I put two right and two left socks together. Seriously?!

My first reaction was, "You're kidding, right?" Socks don't have rights and lefts, they are simply socks! Plus, it is hard enough to keep socks for 9 people straight without adding THAT particular complication! He looked at me like I was the dumbest person on earth (he is fourteen, you know) and set me straight immediately with an exaggerated show of pointing out the microscopic R and L printed on the toe. I hung my head in horror when I realized that not only had I given in to buying this ridiculously overpriced brand of sock because my budding football star's feet were uncomfortable in "regular" socks, but that I had created a right and left nightmare for myself in the process. What a dummy I am.

The second thing I learned is that school assignments are no longer turned in on actual paper. Joey's first real high school assignment is due tomorrow, and I only just learned that it has to be submitted online through a plagiarizing-detecting website. What?! Back in the olden days when I was in high school, I didn't even type papers. There was no internet to cheat off of. There was certainly no way to check that it wasn't someone else's work. I have now been educated that there is a whole new world of cheating now, thanks to the world wide web, and these are the lengths to which we must go to keep our kids honest. Who'da thunk it?

The last and likely most important thing I learned this month is that I need help. Real, extended help. You have no idea how difficult it is for me to admit this, especially since I feel I am getting stronger every month. Nonetheless, my amazing and ever supportive family, extended family, and friends, who have gone to great lengths to help me every day with all sorts of things ranging from rides to meal prep to laundry and endless childcare, have at last convinced me that my situation is unsustainable. Even with my army of helpers, I fall further and further behind in my household chores and in caring for my family. As I am finally realizing that it is statistically (not divinely) unlikely that I will ever be much stronger than I am now, I have accepted his reluctantly.

So, beginning Wednesday, I will have that help. Through a wonderful and trusted reference, I will have someone here with me Monday through Thursday in the afternoons, when I am most tired, to help me with laundry, cooking, grocery shopping and child deliveries as needed. This will take some burden off of those who help me so much (and aren't getting any younger, as one of my parents put it) and it will allow me to spend more time with my kids, which is what I really want to do. I can help them with their homework, hopefully be more cheerful instead of snappy and tired, and be generally less stressed and upset about all the things I can't do. I can say yes when my kids ask me to play board games with them or read to them because I won't be falling asleep on my feet at 7pm. And guess what?! I should have more energy to blog. Let's hope!

Friday, August 17, 2012

I don't actually know if I have any readers left since this blog has basically been abandoned for the last month. I have only the excuse that I have been busy nearly every minute getting the kids ready for school (uniform inventory and school supplies are monumental projects when you have seven kids, let me tell you), and the football season is going strong. This year we have Joey playing for Paraclete and Sam and Tony playing for the West Valley Rebels. Lindsey and Bella are cheering again and Julia is in her first year of competition gymnastics, which is a whole new level of commitment. Throw in two Girl Scout troops, endless doctor, dentist and orthodontic appointments and the addition of homework this week, and it would be too much for a small army to handle, let alone for someone not functioning at full capacity. I am tired just reading this over!

Jay has been traveling a lot as well, and while I am not really complaining since I am simply thrilled that he has a job he loves that can support us all, it is definitely hard to get it all done. Needless to say, I never do, even with all the help that grandparents and friends give me.

When I noticed recently that I was getting more "are you OK?" emails than junk mail, I realized I had better let you all know that I am fine, simply constantly at or above capacity.

No news on the cancer front (and believe me when I say no news is good news). I have my next set of scans in late September so there will be nothing to report until then. I generally feel fairly well as long as I pay attention to the signs my body gives me and don't overdo it. I have a rough week every time I get an Xgeva injection (flu-ish) and am often quite fatigued in the afternoons. Lately I have been fighting a variety of minor yet unpleasant infections that, due to my suppressed immune system, never seem to end. But all this is small potatoes given that the cancer is under control. These are the side effects of what I must do to stay alive and I am more than willing to endure them, as much as I would like them to go away.

Since I last posted, Tony turned 7, Sam turned 11, Bella started Kindergarten, Lindsey began her job as Treasurer for the Student Council, we had a visit from our dear friends from Northern California and we ate fresh corn from our garden for the first time in a few years (yum!). The kids have been swimming nearly every day of the summer, often with many friends, and I have been busy trying to keep them all fed! I am still singing, which is a great joy for me, and I am looking forward to having a few regularly scheduled hours a week to myself as Natalie begins preschool in a few weeks. I am also happy to have Natalie home with me a few mornings since all too soon she will be in Kindergarten herself and then what will I do? I can't imagine.

Thank to all of you who keep checking this blog faithfully to see how I am doing. I am sorry I have become such a sporadic poster. As always, I hope to do better in the future.

Wednesday, July 18, 2012

I am on an airplane on my way home from a six day workshop in Theology at the beautiful Arnold Hall in Pembroke, MA. What a privilege it was to be there.

The 25 women I spent this week with were nothing less than inspirational. Young and old, from several countries, married and not, professionals and homemakers, both mostly mothers to families of all sizes, these women taught me as much as the dozen or so classes I took on theology. There are a lot of really good people in this world, doing amazing things in the interest of our nation and our society. They challenged me to think about what I could be doing better in many areas of my life, though many claimed that it was actually I who was inspiring them through the story I am living out right now. Imagine that.

We had an excellent priest, Father Bob Connor, give our classes. He is without a doubt the best-read person I have ever met. In order to understand theology and philosophy at the level at which he does, he has not only consumed every important work written on the subject since 600BC, but he can quote page numbers and actual paragraphs of the most pivotal ones. He was a pleasure to listen to, easy to follow through a very complicated subject, and seriously enhanced my view of what being Christian is all about.

It was a lovely vacation for me, with delicious and beautiful meals showing up regularly, only my own minimal laundry to be done, and lots of time to read and think and pray. With no internet access (other than spotty 3G), I found many different ways to spend my free time, but mostly chose to get to know the ladies that were there. It was time well spent. (Although I really missed my family and can't wait to plaster them with kisses upon arrival!)

No matter what your faith, I challenge you to get to know it better in theory and practice, which should be one and the same. We can't truly understand our faith properly if we are not formed by others before us, which is why things like classes, reading and spiritual direction are so important. Our Catholic faith is 2000 years old and full of richness--the faith of the Jewish people even older. There is so much there for us to learn and understand, and yet you don't have to be a theologian to be a great Catholic. That is the beauty of faith.

Saturday, July 07, 2012

To those of you who have suffered through all of my cancer-related posts over the past two and half years, you know that since the very first day I have been asking for Bishop Don Alvaro's intercession in my healing.

For those of you not Catholic, you may be wondering what this means. Catholics believe that there are many people already in heaven and that they form the communion of saints. Since these souls are physically very close to God himself, it makes sense that we would ask them to intercede for us with him. Of course, God hears us just fine if we approach him directly in prayer, but to have a saint already there asking him for what we need on our behalf can't hurt. It is just like asking our living friends to pray for us, except these saints have an even more direct line. We never, ever worship these saints, we just ask for their assistance from time to time and try to live as they did since we all want to become saints ourselves.

The very first day I learned of my Stage IV diagnosis I was at UCLA alone (it was the first day that week Jay did not accompany me because I insisted he stay and work since he hadn't all week). I had never considered it as a possibility and was totally shocked. Not knowing what else to do, I walked the short distance to Westfield Residence, a student residence under the care of Opus Dei. I knew there would be a tabernacle in the beautiful chapel there and it was all I could think to do.

The residents graciously let me in to pray. I sat in the oratory in front of the tabernacle and cried and prayed for about an hour before a numerary named Ann came in and silently handed me a prayer card for Bishop Don Alvaro del Portillo, who was St. Josemaria Escriva's (the founder of Opus Dei) right hand man and successor as the Father and Prelate of Opus Dei after St. Josemaria's death. I had heard of him but knew little about him. I looked at the prayer card for awhile, considered it must be a delivery from God somehow, and have recited the prayer for Don Alvaro's intercession most every day of my illness. He needs miracles to become a saint and I need a miracle to stay alive to see my kids grow up, so it seemed to be a good match to me.

I learned a few days ago that Pope Benedict named Don Alvaro "Venerable". This is amazing news! There are four stages to becoming a saint. First comes "Servent of God, then "Venerable", then "Blessed" and finally "Saint". This step takes him halfway to canonization. I seriously hope to be part of the miracles needed to push him along this path.

For those of you who are interested in learning more about him, visit opusdei.org and click on canonization causes. Also, below I am including another link (I know I have placed this in my blog before, but it's been awhile) to the very same prayer card I recite daily.

Wednesday, July 04, 2012

I say "our miracle" very specifically because it belongs to us all. To all who have helped me through these past two and a half years, all who have prayed for me incessantly and continue to do so even now, and most especially to my family who still have a mother against all odds. God is so good.

I got my latest PET/CT scan results back yesterday and there was plenty of good news there. All major organs clear, brain clear, no sign of original tumor. Nothing life threatening at all. The only small fly in the ointment is continued and intense activity in the left lateral rib and T9 vertebrae (which could be indicative of healing as I am taking a new bone strengthening cancer drug called Xgeva) and one new spot on my right femur. My oncologist was pleased with the report and so am I. The bones may hurt, but they won't kill me. As long as it stays put things are looking good.

I continue to contend with various and ever-present side effects from the many medications I am on, but I can live (and pretty well, too) with these things.

Jay's friend, a neurologist, commented recently to him that in his entire career he has never seen anyone bounce back from brain mets like I have. That was wonderful to hear.

Wednesday, June 20, 2012

It's been awhile, now hasn't it?! Sorry--I know some of you worry when you don't hear anything from me for awhile, but I can assure you that I have been mostly fine, just busy.

Our family took a vacation the first week of June to Fort Lauderdale, Florida. I would love to share some of the fantastic photos I took but, alas, in the middle of a fish feeding frenzy (literally, see photo below taken with iPhone) our camera was accidentally kicked off the dock and into the water. Although a very nice man with a long net helped us fish it out, we have so far not been able to get any photos off of the card. But we haven't given up yet. Not only did the camera have our vacation photos but also Joey's graduation, so I am truly mourning the loss. I am very grateful for the few photos I took with my iPhone.

Aside from that loss (and a bit of child bickering), the vacation was lovely. We went to an alligator swamp and rode on air boats (remember Flipper?!), went on a silly duck tour (a land/water tour of Fort Lauderdale that we all really enjoyed) and rented a boat two different days on Islamorada in the Keys. That was our favorite place which is why we went back even though it was a bit of a drive. The kids swam right off the back of the boat in the warm Gulf water.

Here are the kids in front of the duck tour:

This was my favorite beach, on Key Biscane. The kids didn't like it because it was too windy that day to skimboard, but it was my idea of paradise. Notice that major storm coming in...it was kind enough to wait until we were back in the car before unleashing.

Poor Lindsey broke her arm right before we left, but with the wonder of waterproof cast linings and a cast cover she was able to swim pretty much normally. The cast came off yesterday with a treasure of Florida sand inside. No wonder it itched her so much! Here she is the day she got it (No, that is not a beer, it is a Mountain Dew):

After years of no casts, we have now been gifted with two in two months. May the trend end!

Finally, here is a photo of Linz on the 19th floor balcony of our hotel. It was nice having a pretty amazing beach right across the street.

Jay travels a lot, but the good side of it is that every two years or so he saves up enough Marriott points and air miles to get us all somewhere fun for free. Our only expense for this 8 night vacation was our rental car and food. Can't beat that! Especially since we had a full kitchen and laundry in our room.

So bear with me as I rejoin life in the real world. It was definitely difficult to come back, though nice to be home at the same time.

Thursday, May 24, 2012

It's official: all the kids can swim now. What a relief! Clearly, they still need to be watched while in the pool, but the years of having a baby or toddler on the loose who would immediately sink if dropped in are officially behind me. Yippee!

Enjoy this video of Natalie's newly minted swimming skills, along with the running "me too" commentary from big brother and sister Tony and Bella, along with some comments from mom along the way.

Saturday, May 19, 2012

May is always a busy month. We have two birthdays in our family, someone is always graduating from somewhere, Mother's Day is in there and school is wrapping up (unless you happen to attend one of the Catholic schools that have gone to 200 days this year in which case you have another month to go). It seems unfair that one month of the year should have so much good stuff, doesn't it? It's certainly a challenge to those of us who have to run around like crazy people to get to it all!

Nonetheless, as crazy as it may be, there have been so many amazing blessings jam packed into this one little month that I thought I'd devote this post to them all. This way you don't have to suffer through a dozen separate ones!

The first weekend brought our goddaughter Lucy's First Holy Communion. It was a joy to see her receive the Eucharist for the first time, and nearly as great a joy for me to see Sam holding her baby sister Georgia. Can you say, "Awwwwww?"

The next weekend was Julia's birthday, which fell on Mother's Day this year. Julia turned 9 and I can hardly believe she is half way to being an adult already.

This weekend I am in San Antonio for Jennifer's daughter Hannah's high school graduation. I have known her literally since the hour she was born and am wondering what happened, when exactly she grew up. She is going to Truman State in Missouri in August.

Other miscellaneous items included Joey being promoted for the second time in the Civil Air Patrol (here he is in the BDUs) and having his second opportunity to fly a plane. Tomorrow he will turn 14 years old. Again, how did this happen?

Finally, I could not resist adding this photo of Tony who went to his Western-themed playday dressed as a Three Amigo.

Only in our family would the six year old even know who a Three Amigo is. He must certainly be the only one ever with a cast (he has since had it removed).

Lindsey competed in her first Mathletes competition and was very happy to have made the team. Bella will be graduating from preschool at the end of the month and Natalie...well, she is busy figuring out how to take over the world.

The month is only a few days past half over and we still have Joey's birthday tomorrow (as I already mentioned) and his 8th grade graduation on May 30. A truly crazy month.

How happy I am to simply be participating in the normal events of our lives, no matter how tired I am at the end of each day. Simple blessings are everywhere.

Wednesday, May 09, 2012

Bella is always asking me for gum and I am always saying no. I don't like gum chewed in my house because somehow it always ends up on my carpet, stuck to a wall, or going through my laundry, no matter how many times I pre-admonish the child I allow to have the gum. I am not a fan.

Nonetheless, I am only human and after days and days of asking to have a piece of gum that a friend gave her, I reluctantly gave in and allowed Bella to chew the gum. I gave her a long list of rules about taking it out of her mouth, disposing of it properly, bubble blowing, etc. She happily agreed to all conditions and acknowledged my threat that if that gum went anywhere other than the trash can she wouldn't get gum again for a very, very long time.

Off she skipped, delighted with her situation, chomping away. I felt pretty good about the decision, thinking she is getting older and more responsible and perhaps it would work out this time.

Sure it would.

Not 10 minutes later I hear a minor crash downstairs and Bella comes running up the stairs sobbing her heart out and rubbing her head. My poor, clumsy child had tripped over something and fallen on the tile; upon impact, the gum flew out of her mouth and landed who knows where. She was absolutely hysterical, thinking she would never chew gum again as long as she lived. Poor thing, and she was trying so hard to be responsible with it.

As she was gasping for breath and shaking her head in disbelief at this turn of events, Jay told her to turn around. She stopped crying for a second and asked why. He told her to just do it. Darned if that gum wasn't stuck to the back of her hair. He pulled it out with only a minor loss of hair

I can't remember when I laughed that hard, full from the belly, tears and all. She looked so miffed as to how this could possibly happen. Her reaction to my laughter made me laugh even harder: "It's not funny!" When I assured her it was at least a little funny, she sobbed, "I don't like when it's funny!" Finally, she capped it off with, "It's zero funny!"

Between snorts of laughter I told her that since she didn't actually lose her gum, she would not be penalized, and her relief was palpable.

Her immediate next question was, of course... "Can I rinse this off and keep chewing it?"

Thursday, May 03, 2012

Quite unfortunately, I have not been feeling as well as I think I should be. (Don't I have a lot of nerve suggesting that I, a Stage IV cancer patient, has any claim on feeling well at all!!) This has been going on for several months now. I am in a pattern of feeling great for a few days or more followed by a few days or more of being exhausted, sleeping more than usual, and feeling more nauseous than usual. I have been miffed by this since I was on such an amazing trajectory of healing after the horrors of last fall. This "getting better" lasted for at least a few months so I definitely resisted the new pattern when it made itself apparent.

Sometimes I ask Jay, "What do you think is going on?" and he always answers, "Maybe it's the cancer." It's a joke actually, because I have very little in the way of cancer going on in my body right now (thanks be to God!). There is nothing in my liver, brain, breast, lung, kidneys or abdomen, so why should I be so fatigued and nauseous? It makes no sense.

Until you consider all the medications I must take to remain in this happy, cancer-mostly-dormant state. I am on three cancer drugs: Herceptin is systemic every three weeks, in the Omaya Reservoir every six weeks. I usually have a dip in how I'm feeling about three days after systemic treatment. I take Tykerb daily, to fight the cancer that is trying to make a home in my brain. That has lots of side effects that have happily lessened over time for me. Yet I have to be very careful about what I eat because some things can cause the medicine to dose stronger than it should, resulting in the kind of toxicity that landed me in the hospital the first time. Finally, I just began taking a new drug for my bone mets called Xgeva. This should, over time, help dissuade the cancer from rooting in my poor skeleton and hopefully promote healing in the already-damaged areas that are painful for me. My first dose of this was Tuesday and I have had a hard time staying awake all week. The primary side effects of this one? Of course, fatigue and nausea. I will receive this every six weeks.

In addition, I take a blood thinner injection twice a day to deal with my blood clots and another drug called Megace to help stop the bleeding from my recent surgery. I should get off of that one soon, I hope, though I don't think that one is a big contributor to my general malaise when it is present. Next, I have what I'll call my comfort medications, ones I take as needed for pain or nausea just so I can function some days. Finally, I receive a decent amount of IV contrasts and nuclear tracers for scans, along with anesthesia for surgical procedures or biopsies, which never make a person feel very healthy. Altogether, that's a lot of medicine!

So anyway, I write this not to complain in any way, but rather to help myself come to the understanding that not only is it not unusual for me to not be feeling 100% all the time, but it would be pretty remarkable if I did. I have become so comfortable with having cancer that I sometimes forget what a serious disease it is and what serious drugs I am on to control it. How could anyone feel normal with that many chemicals coursing through their veins? Every minute I am on my feet doing dishes or laundry, awake and watching American Idol with my kids, driving someone somewhere they need to be, watching my kids do their sports and activities, is a small miracle, and the fact that the cancer has, for now, receded is simply icing on the cake.

If this is my quality of life going forward, I'd say I am very blessed. To want to feel like I did before all this happened is only human, but I am officially going to align my expectations appropriately to my situation and try not to get so frustrated and grumpy when I am having a bad day, and I certainly won't continue to worry that the cancer is on the attack again every time I have a hard time getting up in the morning. Par for the course. Why did it take me three months to figure this out? It doesn't seem that complicated!

I could not agree more with what one wise soul posted on the breast cancer discussion boards: My favorite side effect is being alive!

Sunday, April 29, 2012

I just discovered what remains of Lindsey's Easter basket hidden in the garage with the above note attached.

In case you can't read it, it says:

Lindsey warning: DO NOT TOUCH or become an Avox, get your limbs ripped off one by one. Have a nice day!

A few thoughts on this note, written by my nearly straight A, very bright 6th grade student...

1. So excited was she to get her message across that she misspelled her own name in her haste. I was both horrified and amused by this.
2. An Avox is a reference to the Hunger Games in case you are wondering. It is a person who has been physically punished by the government for rebelling against it. If you know Lindsey, you know she is obsessed with the Hunger Games, so this is not as awful as it sounds.
3. Do you think my kids are just slightly wary of their candy being consumed by their siblings if they don't take drastic measures? I had no idea things were THIS desperate...
4. My favorite part? Have a nice day! That is soooooo Lindsey.
5. Think I have some work to do as a mother as far as teaching my kids to respect each other's things and positive messaging in general? Perhaps.

I don't think I'll go back in the garage for awhile. I don't want to know what else is hidden in there!

Saturday, April 28, 2012

For those of you following along and wondering how my minor surgery went on Friday, I am happy to report that all went well and, overall, I am feeling much better than I thought I would be at this point.

Since I don't believe I mentioned this ahead of time on my blog (because I have been less than consistent in updating), for those of you confused by this because you've never heard anything about it, I had to have a fairly minor surgery to remove an endometrial polyp that was causing me some trouble. It was a simple, outpatient procedure that was complicated only by the fact that I am on blood thinners because of the major blood clot I had in my leg last fall and has still not dissipated. Happily, all went well: I did not bleed excessively and I am recovering nicely. The mass was biopsied several weeks ago so we already know that it is not cancerous, which is of course what we were most concerned about.

This was my first surgical experience at Cedars-Sinai and it was very pleasant (if this sort of thing can be pleasant). I continue to be impressed by the staff and facilities I have come across (and I have hit four departments already in my first month, so my sample size is not small) and am very happy to be there.

Nonetheless, the situation is not without irony. Jay's company was acquired this week by IBM and our health insurance will be changing as of June 1st. Naturally, it covers UCLA. If this had happened three months earlier, I would not have had to go through this transition. But with faith that everything happens for a reason, I am certain I was meant to make the change. And I am feeling quite lucky to have access to a very good health plan in the new situation, though it will cost us a bit more.

Next up: Regular systemic Herceptin infusion on Tuesday as well as an intrathecal (in the brain) dose. Routine stuff for me now...can you imagine?

Thursday, April 19, 2012

Tony hurt his elbow in a trampoline incident on Easter Sunday. A friend of Joey's accidentally landed on his arm causing us all to think it was dislocated. Jay raced off to urgent care, leaving me to slice the lamb (which, if you know me at all, is quite traumatic). X-rays didn't show anything definitive, so they sent him home with a sling and a lecture on trampoline injuries.

I know, I know...trampolines cause more injuries every year than anything else, blah, blah, blah. I don't doubt it's true, I just would like the people who self-righteously proclaim this to live with seven extremely active children for a full 24 hours with no trampoline or swimming pool and see how quickly they get on Walmart.com to place their order.

I knew between football, gymnastics, tree climbing and trampolining that it would only be a matter of time before we had a broken bone, but I am actually delighted that it took this long. Tony is the first official real cast in our family, and, at that, his injury is minor. (Lindsey once had a softball-related broken thumb, but this is the first actual cast.) So, I still consider us blessed in this regard as some of my friends, with active boys in particular, have spent many hours in casting rooms for limbs of all kinds.

At any rate, over the past 10 days, Tony's injury did not get better and he would not take his sling off. He is not one to nurse his injuries or refrain from rough play of any kind, so we knew something was not right. A visit to the pediatrician led to a referral to a pediatric bone specialist (incidentally, the same doctor who handled Natalie's hips) and Tony came home today sporting this fine cast.

The doctor could not clearly see what the injury is, but cited it as a fracture, telling me that the fluid accumulation and soft tissue swelling around the joint indicates at best a bad bruise and more likely a crack in the joint that cannot be seen. She casted it to be on the safe side and he is really happy to have it secure. He was always babying the arm in the sling and already I can see he is using his shoulder more now that the elbow is stabilized. The cast will come off on May 8th and he should be good as new. He, for his part, is delighted to have a PE excuse for a whole month and is busy collecting signatures on the cast.

The first one to sign it was Tony himself, and he wrote, "me". I enjoyed that.

Wednesday, April 11, 2012

I have officially made the switch away from UCLA to Cedars-Sinai. It is definitely different, but I think I am in very good hands and I like my new doctors very much.

When I first learned I had to leave my long-time oncologist who has done such an excellent job keeping me alive and who I trusted literally with my life, I was naturally pretty upset. I waited until the last possible minute to switch, hoping that Blue Shield and UCLA would make up. But they didn't, so I had to make the move.

I was recommended to my new oncologist, Dr. McAndrew, by so many different people and doctors that I have lost count, so I was quite confident that she was the one to see. Same thing for my new radiation oncologist, Dr. Burnison. As a double bonus, the two of them speak on a near-daily basis about their in-common patients and work very well in tandem. They will have plenty to speak about where I am concerned!

The most striking difference between UCLA and Cedars-Sinai is the amenities and service. Private hospital vs. public hospital, I suppose. Both the cancer center (radiation) and my oncologist (systemic treatments like chemo) have valet parking free (or $2, depending) for patients. I paid $11 at UCLA to hike a mile to my treatments (until I got my handicapped placard which then reduced it to $4, but still). This is WAY, WAY better.

Then there is the food and beverage service. As I received my first treatment in the much-larger infusion room of my new oncologist on Monday, a candy-striper-type volunteer walked around with a big basket of snacks of all kinds and offered to bring us juices, coffee, ice water, whatever. She circled back around about every 20 minutes in case we needed refills. I confess, I loved this and enjoyed some cookies and coffee...and chips...and ice water. My last oncologist had the juice and snack basket but you had to help yourself on the way in. Again, this is a great improvement.

The radiation oncologist's office had giant bowls of beautiful fruit on every table in the waiting room and a cappuccino machine with no coins required. Again, I really enjoyed this detail. My last radiation oncologist had saltine crackers in a bowl. Nice if you are nauseous, I guess...

Don't worry, I understand that the quality of the medical care is more important than the perks, but I think I am in equally good hands medically speaking with my new doctors. Both of them are women, so it was a very different experience for me in terms of their questions about details of my life and quality of life. The male doctors I have had are more down to business and all about killing the cancer (which is not a bad thing). But imagine how surprised I was when one of them asked to see pictures of my kids and the other asked questions about where our ancestors were from. They were both very concerned about how I was feeling just as much as how the scans looked and that was very nice. They both also spent an hour or more with my during my first appointment to be sure they understood my long and complicated history. They explained the details, pros and cons of various treatment options in great detail, which I appreciated. I already feel very well taken care of.

My oncologist has some ideas about new things to try to help stop the bone mets in their tracks and keep me in remission. It is nice to have a fresh look at my situation while at the same time difficult to transmit all of my history. There is always good and bad in every situation, but happily this all seems to be mostly good.

While I was getting my treatment a marriage and family counselor came by to see how I was REALLY doing and offered to counsel me, my caregivers or children, all as part of the service of the office. Another very nice touch.

Next week I will be having a bone scan, and an ultrasound to check on the status of my DVT (blood clot). We will decide from there what to do about my spine which is currently the only active cancer we are dealing with.

I feel very, very fortunate to now have and to have had access to the very best care from the beginning of this adventure. (And, now, coffee and cookies to boot!).

Tuesday, April 03, 2012

While I was driving home today I got a bit warm (yes, I who am always cold), so I took off my hat and put it in my purse. I forgot I wasn't wearing it when I got home and got out of the car. I rarely if ever go outside without a hat.

As I stood there, just outside the car in my driveway, I felt something I haven't felt in nearly a year: I felt the wind blowing through my hair. It felt wonderful!

My "hair" is still pretty pathetic, about a quarter to a half inch long with thin spots and uneven growth. It is nearly all gray in the front and brown in the back. It has been many, MANY years since I have seen my natural hair color (I began graying in my twenties) so I am enjoying this virgin hair, never treated, so very soft.

I polled the kids recently on what I should do about this hair since it won't be long before I can go out without a hat. Should I color it or let it be? I am biased toward letting it be, as I am not embarrassed by my gray hair--I have earned every strand. I did not expect Julia's response: "I am too young to have a mom with gray hair! PLEASE color it!"

I guess I understand that, so I will probably at some point color it. But for now I am enjoying the sensation of this afternoon, of being able to run my fingers through the fuzz, of having something to shampoo, and I don't much care what the color is. I have some hair, and that is a pretty delightful thing.

Monday, April 02, 2012

In the best possible way, though, because it was by my daughter. (Warning...maternal bragging post approaching, not for those easily made queasy).

I was "helping" Lindsey with her math tonight. In reality, I was watching her quickly figure out word problems that left me with my mouth hanging open. I did actually help with one where I could use an algebraic equation to answer, but all the other ones required approaches I could not even guess at.

There was this one problem that I was certain did not have enough information to answer. I won't go into the details of it in case every single person reading this blog can figure out the answer in 10 seconds or less--that kind of upstaging I couldn't enjoy. But I read this problem, realized that there was no way on earth I could ever figure out the answer and was about to tell her so when she asked me to check her work. She explained her answer and I could not believe how clearly she had seen the problem and how quickly she had figured out how to answer it. I didn't think there even WAS an answer, I thought the whole thing was a farce. But when she explained her reasoning to me there was no doubt she was right and it all seemed so incredibly simple.

In fourth grade, Lindsey struggled with math. She set a goal that year that in 5th grade she would make the advanced math class. All summer she asked me to print out math worksheets so she could practice, and darned if she didn't succeed in meeting her goal. She has gotten better and better at math ever since she realized that if she works hard enough she can meet any goal she chooses to set for herself. This is an invaluable life lesson and one that can't be taught except through experience, and I am so happy she has learned this at such an early age.

Oh, and in case you were wondering...I couldn't have figured this problem out even before the brain radiation, so I will not be playing that card tonight. (But I did consider it.)

Wednesday, March 14, 2012

My radiation oncologist's office called today, as I expected them to. I grabbed a pencil, ready to write down the date and time of my brain radiation now that my simulation (making of the mask that holds my head to the table) and small slice MRI were complete. The medical physicists had had enough time to figure out how to position the radiation relative to my brain lesion and I was ready to get it over with.

However, they did not have an appointment time for me.

Rather, they were calling to tell me that, from both the simulation CT and the 3mm sliced MRI, they could not find any evidence of any cancer in brain to treat. The 5x7mm lesion clearly seen in February is simply not there, and neither is anything else. They made no appointment because they can find nothing to treat.

To say I am stunned is an understatement. Yet, at the same time, I am somehow not surprised. I know that sounds crazy, but all this time so many of us have been praying for a miracle and, though many will say it was actually due to this past treatment or that medication, you all know what I think. I think we got a piece of our miracle.

This leaves two, far less concerning, areas to either investigate or treat (a definite lesion on my T9 vertebrae that hurts me a bit but will not kill me, and a minor biopsy taking place on Tuesday). I have seen the reports and all evidence shows that my body and brain are currently nearly free of cancer and the little I have can be well-handled with minimal side effects. All vital organs are entirely clear.

When I was imagining possible outcomes for my brain metastases, this was one I did not even think of. Who could?

Thank to you all who have prayed for this result so faithfully. Clearly, it is working.

Monday, March 12, 2012

We have had a mouse living in our kitchen for quite a few months. Every few days we see him, dashing from under the fridge to the dishwasher, or, most disturbingly, hopping out of the trash compactor when someone opens it. He has been getting steadily fatter as we are a great family to host a mouse, crumb wise. No matter how often we sweep the floor, it is a matter of moments before someone wanders through and drops more.

We have been trying to trap this mouse for months. At first (because he is awfully cute, just a little brown field mouse) we tried building a humane trap. After some internet research, Jay went off to Lowes and came back with buckets, wood, and various other items to build an elaborate trap. He covered a soda can with peanut butter, built ramps so the mouse could get up and then arranged the can so it would spin when touched, thus dumping the mouse into the bucket where we would find and release him the next morning. We didn't count on the dog, who licked all the peanut butter off the can overnight and then promptly got sick. Fail number one.

Next, we called pest control and asked for help. They set sticky traps at common entry points to the house. We never caught a mouse, but instead caught a baby snake. Seriously. We haven't felt quite comfortable at home ever since. Fail number two.

Then we set classic traps with cheese and peanut butter in his favorite hiding places. By this time, humane was no longer a consideration, we just wanted the mouse gone. Every morning we would wake up to find the traps licked clean and unsprung. This is one smart mouse. Fail number three.

During this time, we got a cat. She is a really great cat and we enjoy her on many levels, but it certainly crossed our minds that she could be of use to us as a mouser. Over the months, she has noticed the presence of the mouse and spends many hours staring under the refrigerator where she most often has seen him run. One time she caught him in her mouth but when Jay ran after her to collect the mouse she got scared and dropped him. Fail number four.

This morning, about 6:00am, before anyone else was awake, I was in the kitchen making the kids' lunches and the cat was in her usual position in front of the refrigerator. I opened the trash compacter and jumped when the mouse hopped out. Happily, the cat did not fail to notice this and within an instant had the mouse in her mouth. I started screaming, "Mittiny has the mouse, Mittiny has the mouse" and people started crashing out of bed and throwing open their doors. What a way to get the kids out of bed for school!

Mittiny ran up the stairs with the mouse in her mouth, lickety split, and proudly delivered it to Lindsey (her actual owner). As soon as she released the mouse and it ran, she grabbed it again and--get this--tossed it in Lindsey's bathtub where it could not scrabble out. What a smart cat!

We shut the bathroom doors and braced ourselves for carnage.

After about an hour, when the noises had stopped, Jay ventured in to see what we were dealing with. A very happy Mittiny came out, satisfied that she had played properly with her prey and pleased her owner, but the mouse was still very much alive and uninjured in the tub. Fail number five.

So, we had the mouse trapped, but the cat was clearly not going to finish the job (got to keep her a little hungrier, I guess!). Jay, my brave husband, scooped the mouse into a tupperware, got in the car and released it in a distant field, certain that even if it could remember how to get back to our house, no amount of crumbs would be worth another possible hour spent "playing" with the cat in the tub. I don't expect we'll see this mouse again.

Sunday, March 11, 2012

So sorry! To those of you who check this blog regularly, it must seem an eternity since I wrote anything. I will truly try to be more consistent.

The problem, as far as I can tell, is that I am vacillating between feeling well and not feeling well. When I don't feel well I sleep a lot and spend tons of time watching fine programming with my kids such as Phineas and Ferb and Spongebob while shivering under my warming blanket. My kids love this (and I am actually amused at some of the shows--scary, isn't it?). However, it is not very productive, so when I do feel well I immediately launch into hyperdrive and work to restore order to my life and my home. There is simply no place for blogging in either of these modes, so I am just going to have to be more consistent about feeling well, that's all. I'll be working on that...

I am busy preparing for brain radiation sometime in the next two weeks. I completed my simulation on Friday and my 3mm slice MRI on Wednesday. Good news from the MRI: it did not turn up anything smaller or new as my doctor had thought it might. There is just the one lesion and soon it will be jettisoned from my brain. Good riddance! The simulation is where they make your mask, strap you to the table (definitely not for the claustrophobic) and run you through the CT scanner so the medical physicists can figure out where to point the radiation relative to where your tumor is and where you will be positioned on the table. It is a very precise and impressive science.

Just for fun, we are also playing "beat the clock" as we race to get the radiation done before my insurance turns me into a pumpkin at UCLA on March 31. So far we are on track to get this done, but it does add a little excitement into the mix. I have my last Herceptin treatment with Dr. Glaspy and his amazing staff on Thursday. I will really miss them and hope everything wonderful I've heard about my new oncologist at Cedars-Sinai is true. I have no doubt that it is, but it is still difficult to leave a medical team you have trusted with your life for two and a half years.

I did visit one of my new doctors at Cedars-Sinai last week. He was great and knows my new oncologist well and also closed the loop about what he was doing with Dr. Glaspy. I really appreciate that attention to detail since there are so many little weird medical things going on with me--a formerly very healthy person--now. This new doc needs to do a biopsy on a small mass that is probably not anything more than a blood clot or a polyp, but with my history no one is taking any chances. So, off the Lovinox for a day and biopsy away! I am seriously praying it is nothing. I need another cancer like I need a hole in the head. (I mean another hole in the head...)

In the meantime, we have had no shortage of things to keep us busy. We have been agonizing over where to send Joey to high school and have very happily and finally come to a decision about that (Paraclete, yay!). That has taken a lot of stress off me and I know it is the best decision for all of us. Sometimes you just have to go through some songs and dances to get to what's best.

Bella had a birthday in late February and is now FIVE YEARS OLD. Crazy, but true. She is a sweet girl and I am so happy God gave her to us. We had a small party for her at Chuck E Cheese per her request. It was nice that everything was done for us and the kids loved it, but about halfway through the party Jay turned to me and said that the place represented every single value we are trying to steer our children away from: need for continual entertainment, constant push for more (tokens, tickets, prizes), etc. Guess we won't be having any more parties there!

I've also kept busy sorting out medical bills (some of my hospital stays were miscoded and insurance is not paying--but they will, I'm sure, it's just a million awful phone calls until they do), finishing taxes, and doing all the things I'm sure you are all busy with as well. Julia is starting her much-needed orthodontic treatment, Lindsey's Academic Decathalon team placed 8th out of 101 schools on Saturday, Sam is reading the Hunger Games (as we all have been doing), Natalie has figured out Club Penguin and how to spend her siblings coins...

Saturday, February 25, 2012

The scan news is pretty good overall. My liver and lungs remain clear, which is so very important. I have a new lytic lesion on my T-9 Vertebrae (which explains why my back has been hurting of late, but how I was hoping this was just garden variety back pain!). But most significantly, I have a new brain lesion, in the right posterior lobe. It is still small, 5mm x 7mm or so. So, the question is, do we watch it and see what it does, or do we get it out of there right away.

Complicating the matter is the fact that I have Blue Shield and UCLA and Blue Shield have fallen out of contract (as I mentioned in another post). I have one treatment left with my current oncologist as my continuity of care runs out on March 31st. They have been clear that these issues will not be resolved within that time, if ever, so I need to find a new treatment facility.

Dr. Selch, my radiation oncologist, is one of the very best doctors in the world at treating brain metastases stereotactically (one single very targeted and very strong dose of radiation) which would mean no cranial surgery for me. UCLA in general is the pioneer of this stereotactic radiosurgical procedure, and if we are going to be removing this bugger, I want it done by Dr. Selch before I go to someone new. I know there are many excellent doctors in LA County, but I feel so comfortable with the ones I have, especially where my brain is concerned, that I am going to squeeze all I can before I have to move on.

So, I saw my radiation oncologist and my neurosurgeon yesterday and both are willing to push this through within my time limits and definitely recommend that we follow the path of immediate removal. They will be starting with another MRI, this one sliced ultra thin to 3mm. They warned me that when they slice that small they may find another lesion or two in which case they will take those out too.

I can't say I am surprised to learn I have a new brain lesion because, if I am like 99% of people with brain mets, they are likely to keep popping up every few months and my life will become like a giant game of whack-a-mole. I can say, though, that I loved these few blissful months of not knowing and just hoping that I would get a completely clear scan.

Again, this was not a bad scan. What is there is completely manageable and not currently life threatening. Nothing is out of control right now. It just means I have more treatment, sooner than I thought. But it is my understanding that stereotactic brain radiation has very few side effects and I shouldn't go through anything like I did with the WBR. Don't know yet what role Decadron, the evil steroid, will play in this but that will have a lot to with how I view the overall experience, I'm sure.

In the meantime, does anyone know of an outstanding medical oncologist at Cedars-Sinai? I already have a referral for a radiation oncologist, so we are getting there!

Sunday, February 12, 2012

To my complete delight, I am back to cantoring. A light schedule to begin with as I get my sea legs back, but ramping up to normal as we approach Lent and Easter. I honestly did not know if I would ever sing again, and I cannot describe my joy at once again being able to "pray twice" as is so often said of church singing.

When I sing, I don't just hear the words as I do when they are spoken--I FEEL them. It's hard to explain, but when I am singing at mass is when I feel closest to God, and I really, really missed that.

For a few months after my brain radiation I had a significant general tremor that seriously affected my voice. I thought after awhile that it was going to be permanent, but as the Decadron cleared my system the tremor slowly left me and I found myself able to sing more or less as before, but with a little less breath control thanks to the bout of pneumonia, I suppose.

So, the reason I am telling you all this? When I am singing, I feel almost as if I am having a conversation with God. Some songs are written from his voice and some from ours. When I am singing one from his voice, I concentrate on what he is telling me that day, and when I am singing to him, I am thinking of exactly what I am saying to him, even though the words are someone else's, technically. It is a near perfect form of prayer for me.

Today we sang a song at Communion called "Our Blessing Cup" by Bob Hurd. Anyone who regularly attends mass anywhere should know this one. Anyway, I have sung this song a hundred times but never really focused on verse four, probably because we don't always get to that verse, and my perspective on life is quite different now so it wouldn't have meant as much to me before. All I know is that when we were practicing on Thursday I could not make it through the verse without crying. Happily, I made it through just fine at mass today because I had time to prepare myself, but I was worried it was gonna "get me"!

It was as if I were in a private conversation with God in front of the whole congregation:

Verse 4: "For you have heard my voice, for you have heard my pleading. Though death surrounded me, you heard and answered me."

A brief line, but it made quite an intense connection for me, because I believe every single word.

Wednesday, February 01, 2012

Has anyone heard of the break between Blue Shield and UCLA? Blue Shield members are no longer covered at UCLA due to a breakdown in contract negotiations.

Guess who has Blue Shield? That's right, me.

Thank goodness that, after many phone calls and frightening moments, along with a week's delay in my treatment, Blue Shield has granted me a Continuity of Care exception and will continue to allow my treatments through Dr. Glaspy until the 31st of March, by which time they expect I will find a new doctor and treating facility.

Wow.

I have been with Dr. Glaspy and Denise (NP) and their wonderful team of chemo nurses since the beginning and he has done an excellent job of keeping me alive. I don't want another doctor. I don't want another treatment facility. What I want is for Blue Shield and UCLA to kiss and make up before I have to change.

As you all know, I have a Omaya Reservoir in my brain that many doctors do not have any experience with at all. There is no place like UCLA for cutting edge clinical trials. All my records are there. My Radiation Oncologist, who is one of the very best at stereotactically zapping tumors that dare to return after whole brain radiation and stretching out the amount of time patients with brain mets live, is there. I don't want to go, I don't! I know so many doctors and nurses there that I can't go to the cafeteria without seeing someone I know! (Scary, but true). I feel like UCLA is a strange kind of home away from home and I hate that I am being forced to look elsewhere. I hold on to the hope that they will settle this before the end of March, but neither side seems to think this is going to happen when questioned.

We are lucky enough to live in an area with lots of good cancer treatment centers and there are many good oncologists around. I just don't want to find one of them. I am happy where I am!

Blue Shield has given us excellent coverage during all of this and I have been so fortunate to have had the coverage I have had. Is it greedy to say that I want more? Well, I do.

But, like I always tell my kids, "You can't always get what you want..."

Monday, January 23, 2012

Lindsey turned 12 on the 19th of January, and I am in shock at the delightful and beautiful young woman who has taken the place of my frowny-faced, uni-browed baby. She is an amazing girl--independent, helpful (especially with the little girls who see her as another mother in many ways), and has a great, unique sense of humor. She is nearly always cheerful, and is a self-starter who has taken off academically this year. I am so excited to see what she becomes.

Above is a photo of the purple panda cake "Auntie" Jen made during her recent visit (it was SOOOO good to have her back and now we miss her all over again). Pandas and purple, in case you didn't know, are Lindsey's two favorite things. She celebrated her birthday with two parties (worked better for me than one big one) as well as a family celebration. She is very convincing in her need for formal recognition of her aging process... (We are all relieved that the endless celebration has finally ended--except her, of course!)

I am truly blessed to have such a sweet and loving daughter. Thank you, God, for Lindsey!

Wednesday, January 18, 2012

Natalie, for a three year old (actually, for anyone, really) is quite tech savvy. She can operate an iPad or an iPhone like nobody's business. She can find Netflix and locate Dora. She can locate all her preschool game apps and play them. But this week she has taken it to a new level. She discovered Amazon.com and, thanks to my automatically populated password (which has since been corrected) ordered herself several hundred dollars worth of Dora the Explorer merchandise over three days. Happily, all was cancel-able but she was outraged that it would not be shipping. Take a look at this screen shots below showing just some of her rampage...

Guess she's a girl who knows what she wants and doesn't mind helping herself to it! But even I was surprised that she figured out how to buy things. I didn't even know she understood the concept, but by the third day I realized this was no accident (I'm a little slow). Gotta love one-click ordering, eh?!